Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Physio suggestions

Discussion in 'General ME/CFS Discussion' started by perrier, Aug 17, 2015.

  1. perrier

    perrier Senior Member

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    Folks, I really need some suggestions. My daughter has not walked for 14 months,since her last GI haemorrhage. She just was always too walk, and crashed badly from minimal attempts. Things have never been this bad. She's been ill for 13 years, and very often bed bound for months, but nothing this extreme.

    What sort of help should we look for to help her try to walk again. A massage person comes to the house once a week. But this is not really helping. The massage lady said my daughter has no muscles anymore.

    We live in Canada.

    Physiotherapists just force too much.

    Suggestions welcome.
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    Hi, You didn't say if your daughter had CFS. I'm not able to go back and read your other posts. imo if she has CFS and can't walk due to weakness, it's not so much about her muscles and leg strength, but limitations from the illness.

    But of course you have to get her muscles going again. something to build muscle strength,.
     
  3. alkt

    alkt Senior Member

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    you could learn to do gentle massage yourself if your daughter can bear being touched.you could also do some very gentle leg exercises where you actually hold her ankle with one hand while your other hand is just under and above the knee joint so her legs end up with her knee in a raised position. and repeat with the other leg if your daughter is not to fatigued. of cause it would be better if you could find an experienced occupational therapist to teach you how to do these very limited exercises.best wishes to both of you.
     
  4. perrier

    perrier Senior Member

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    Thanks to both of you for writing. Yes, she has CFS. I will try these leg lifts. We do have a massage lady coming to the house. But she can't walk, and I don't know what to do.
     
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  5. minkeygirl

    minkeygirl But I Look So Good.

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    She needs to Build her muscles but the CFS is the fly in the ointment.
     
  6. Tammy

    Tammy Senior Member

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    @perrier.............you mentioned she hasn't walked since her last GI hemorrhage............is she anemic?
     
    Last edited: Aug 17, 2015
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  7. SOC

    SOC

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    We might be able to give more helpful suggestions if you can share with us what is limiting her ability to walk -- dizziness, muscle weakness (physical collapse), paralysis, extreme fatigue... so many possibilities. :( Can she not walk at all, or is it that she gets severe PEM from any walking? When you say she can't walk, do you mean she can't walk 1 meter, or 5 meters, or 100 meters? Can she stand at all?

    What might be helpful in becoming able to walk again depends on what is preventing your daughter from walking. If she couldn't walk before she lost muscle from disuse, then exercise/physiotherapy seems unlikely to solve the problem of not being able to walk. Of course, she'll still need to rebuild muscle at some point, but it looks like you need to get at the root problem first.
     
  8. perrier

    perrier Senior Member

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    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.

    It is not paralysis, not dizziness, but it is muscle weakness which is severe, as well as fatigue, and this tendency to crash badly from trying to walking. She lies on surfaces in the house non stop, OR she is just in bed and all meals are brought to her.

    So when it is the best scenario she goes from the bed, to the day bed, to the lawn chair on the balcony. She lives in the upper part of the house and is unable to come downstairs. 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. 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.
     
  9. SOC

    SOC

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    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.
     
  10. perrier

    perrier Senior Member

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    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.

    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.
     
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  11. SOC

    SOC

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    What I take may not be the right treatment for your daughter. :) There are multiple types of OI which require different treatments. In addition, we all have individual physiological differences. That said, I'm happy to share with you what works for me and my daughter.

    First, OI treatment alone did not make a huge, sudden improvement. It was one of a number of treatments that together made a significant improvement over time. My OI treatments are:

    1) Drinking at least 3 L of fluid daily, 1-2 L of which is well-balanced electrolyte water (we use ElectroMix in water).

    2) Fluid loading to compensate for overnight dehydration. That means chugging 500-750 ml electrolyte water immediately before bed and the same before getting out of bed in the morning. If I start the day dehydrated, as many of us do without management, I feel terrible all day. If I then try to catch up my fluids, it takes all day to get to the point where I feel okay. It's much better to pre-load the night before and in the morning so I don't start so far in the hole.

    3) Florinef -- Florinef needs the extra fluids (see 1. above) to work properly. If you're not drinking enough, you won't get much effect from it. It also didn't work particularly well for me until I added:

    4) Verapamil for tachycardia. Most doctors prefer a beta-blocker instead, but because I have used a rescue inhaler in the past, my doc thought it safer to go with a calcium-channel blocker for me. The tachy med didn't work very well for me without the Florinef. For me, it takes the two together to make a noticeable difference.

    5) My daughter has taken Midodrine on and off, but I have never taken it. I think it doesn't address our particular OI issues, but I've heard it works very well for others.

    6) Potassium -- I get plenty of sodium in my diet, so I don't take extra sodium because it can mess up the sodium-potassium balance. Because Florinef depletes potassium, most of us are more likely to be potassium deficient. Daughter and I definitely are. We take extra potassium either through supplements or food sources.

    Neither of us have taken Imunovir, although my daughter took inosine for several years. For us, treating the viruses directly has been the most effective treatment, but I'm sure that depends on the individual nature of each person's immune abnormalities and viral load.

    I took 200 mg of CoQ10 for years to very little effect. It wasn't until we increased to 1800-2400 mg ubiquinone daily that daughter and I noticed a substantial benefit from CoQ10. This is the dosing level used for genetic mitochondrial disorders, so it seems a reasonable dose if our ME/CFS might be resulting in an acquired mitochondrial disorder.

    It's pricey, but it's worth it. We take the Healthy Origins brand of ubiquinone and the same brand of ubiquinol because it has worked best for us, but I'm sure there are other good ones. Our specialist said to make sure whatever brand you take uses the Kaneka manufactured CoQ10. We take both ubiquinone and ubiquinol on the advice of our ME/CFS specialist. For us, 600 mg of ubiquinol and 300-600 mg ubiquinone works best. The balance (and dose) is probably different for different people. When we are less active, we can get by with less (~1500mg ubiquinone-equivalent), but we generally have to stay in the 1800mg-2400mg range.

    I didn't develop muscle atrophy while I was in your daughter's state (about 4 years, I think), although I did lose some muscle mass and strength. It is coming back as I am more and more able to move without PEM.

    There are some good, easy exercises at MS Trust that can be done lying down or sitting. They can help maintain some muscle function if your daughter does them in a way that doesn't cause PEM. That probably means means only 5-7 reps of each exercise with 5 minutes of rest between exercises, no more than 3 exercises in a session. I was told I could do that 3 times daily if it didn't cause PEM.

    Frankly, it drove me nuts to "exercise" in tiny amounts like that, so I didn't keep it up. I found that increasing activity (unloading dishwasher, folding laundry) as I was able to do so worked just as well for me. However, if your daughter is developing muscle atrophy or other major problems, she may need to do some maintenance "exercise" at a minimal level.

    Best of luck to you and your daughter. I've been in that place where walking across the room causes PEM. It's a miserable way to live. What saved me was seeing an ME/CFS specialist and getting proper medical treatment. It was very difficult to travel to see an ME/CFS specialist. The first one was a 6-7 hour car drive away. Daughter and I had to lie down in the car during the drive and went straight to bed in the hotel. We slept most of the time we were there except during the doctor appointment itself. It was very difficult to manage in the moment, but worth it in the end.
     
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  12. perrier

    perrier Senior Member

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    I truly appreciate your help SOC. I didn't understand that one needs to take both ubiquinone and ubiquinol. Dr. Mercola seems to think one of these is enough. I will look up the links. Thank you, thank you!
     
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  13. Billt

    Billt Senior Member

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    Thanks Soc, This may help my son as well
     
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  14. Billt

    Billt Senior Member

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    SOC , was the 1800-2400 mg of cq10 just at first and you tapered down to the lower level ? If I understand correctly
    you take 600 mg of ubiquinol and 300-600 mg ubiquinone . Is that total daily ? = 1200 mg ??
     
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  15. SOC

    SOC

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    What my ME/CFS specialist told me is that ubiquinone and ubiquinol convert back and forth as needed as long as the conversion biochemistry is working properly. Given that a whole hell of a lot is not working properly in ME/CFS, the specialist suggested that it would be wise to take some of each just in case the conversion is not working right. It seems reasonable to me and since the equivalent dose cost is about the same (ubiquinol is approx 3x more effective (so you only need to take 1/3 as much, and 3x more expensive) there seems no harm in taking some of both.

    Daughter and I do best with mostly ubiquinol -- about 3/4 ubiquinol (600 mg = 1800 mg ubiquinone equivalent) and 1/4 ubiquinone (600 mg). I suspect that the correct dose and balance varies from person to person.

    A warning: Don't start at a very high dose right away. Some people can't tolerate higher doses of CoQ10. As usual, it's smart to start low and go slow. :)
     
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  16. Billt

    Billt Senior Member

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    Got it now. Thanks and yes start low and work up and will get a brand with Kaneka. They don't give it away !!
     
  17. SOC

    SOC

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    It's confusing. :) Our specialist told us to assume ubiquinol is 3x more effective (more bioavailable?) than ubiquinone so you only need to take 1/3 of the amount for the same effect. So when I talk about total dose, I mean ubiquinone-equivalent. 600 mg of ubiquinol = 1800 mg of ubiquinone.

    So we take (at most) 600 mg of ubiquinol, which is equivalent to 1800 mg ubiquinone, and 600 mg of ubiquinone for a total of 2400 mg ubiquinone-equivalent. I don't want to stay at that high a dose if I don't need it. I definitely need it during PEM, and currently because I'm adding in strength and stretching exercise at a studio. I hope to go down if I can do so and continue to function as I am. Daughter is currently at 1500 mg ubiquinone equivalent (300 ubiquinol, 600 ubiquinone) and doing okay so far.
     
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  18. Billt

    Billt Senior Member

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    Thanks my friend. I am a little slow but got it now. thanks for explaining it. Be well
     
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  19. SOC

    SOC

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    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.

    We like this brand of PQQ because it costs the same as others per mg of PQQ, but also has acetyl-l-carnitine and methylcobalamin.
     
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  20. Billt

    Billt Senior Member

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